Hello Everyone,
I am a 24 year old female that has been suffering from Vestibulodynia for 5 years. First I am just going to cut and paste some emails that I have sent to other people that have been suffering with this same problem, instead of retyping everything. Everything below are symptoms that I have experienced with Vestibulodyia, and my story of how it started. If you are only intersted in the treatment scroll down to where you see the exclamation marks.
I started birth control around 14 or 15 like I stated in my letter, then at 18 I went off of it because I was getting ready to leave to study abroad in Norway. I left in August of 2003 and didn't have a period until about December. I also just found myself a Norwegian boyfriend at the time but we were not sexually active. On New Years Eve I stayed at his house and we had oral sex, the very next evening I had a burning sensation and a whitish discharge. However, I cannot recall any itching or odor. A friend of mine informed me that I most likely had a yeast infection and that I should try an over the counter suppository. Due to the fact that I was in a foreign country and did not have a doctor there, I went ahead and took her advice. I tried the five day suppository package and it seemed to help some, but then a day later it came back. I went and got another supply. About two more packages later, I thought it important that I tell my host mother about this problem so I could see a doctor. She took me to her regular doctor (not gyno) who did not check me out but just prescribed me diflucan. When the diflucan didn't work, I tried another stronger suppository and then a vinegar douche that my host mother told me she did in the 60's. I'm afraid I added too much vinegar because shortly after that a had more whitish discharge and more burning. Perhaps I really upset my normal vaginal ph...not sure. I went to three gynecologists in Norway in about a 3 month time period and each one would test me for everything (yeast,bacteria,std's,etc.) and the tests always came back negative. I still to this day don't know if what I had was a yeast infection because the tests always came back negative. I either never had one to begin with, or the medication I took affected the test results. Anyway, after the discharge went away I was left with a burning sensation in the lower part around the vaginal opening. One gyno advised that I go back on birth control and I did. It didn't help so I went off again. Three more months passed until I finally returned home. It took two visits to my gyno for her to tell me that i had vestibulitis. She then presumed to send me to someone else who knew more about this issue. From there I went to another doctor who flat out told me he didn't know that much about the issue, but he was willing to try some of the things he read about. First he gave me a steroid cream that just made it worse. Next I was given diflucan every other day for a period of about 3 months. No results. I was given lidocaine which numbed the area temporarily but also not completely. I stopped seeing him because his next advice was surgery.. scary! I sucked it up for another year because I returned to Norway. I was still with my Norwegian boyfriend but we might have only had sex twice that year because it was too painful for me. Sometimes it was hard for me to pinpoint where the pain actually was because now it was in the entire vestibule. The burning, stinging sensation would range daily on a pain scale for 1 to 10 with no known cause..it was so frustrating! I finally returned home the summer of 2005 to start college. I also started dating someone else, and the painful sexual struggle began once again. From 2005 to 2007 I sucked up the pain and tried different birth control from yaz, the ring, to ortho tricyclin, etc. Everytime I went on birth control the pain was worse. As much as I tried to figure out what was causing my pain, I could never arrive to any conclusions. But the fact that it was more painful on birth control was obvious. Then in the summer of 2007 things got worse. I started to have more burning with urination. I would take cranberry pills just to find out that they were making my pee burn more, along with wine. God, that was depressing. I figured I was now becoming more sensitive to acidic foods and that they were simply irritating to my urethra and my vulva. I then read that the tissue in the vestibule and in the urethra are similar. The burning became so bad that I finally found another doctor in the Columbus, Oh area (I go to Ohio State), who had a good reputation. Right away she put me on Gabapentin. When that didn't help she just kept upping the dosage until I was on 2400 mg a day. I am still on this but plan on getting off at my next appointment because it is clearly doing nothing for me. I have been on it for a year and a half. She also prescribed me an estrogen cream that I was to use nightly. Estrace irritated my skin so a got a special estrogen in petroleum base from the pharmacy. Sometimes I thought this made the skin feel better, but not entirely. Next she put me on the antidepressant Elavil. My body just couldn't handle it. I was tired all the time and never wanted to do school worse, plus it was doing nothing for my pain. Finally I started the biofeedback therapy with electric stimulation. Honestly, this is the only thing that seems to work about 30% of the time. Around this time I started to notice a trend. I had been off birth control once again for quite a few months, and I started to notice that the pain would get much better in the middle of my cycle for about 2 days. This point was around ovulation. I was so excited because now i was actually having a couple of pain free days a month with some sex drive. I told me gyno about this and the fact that birth control made it worse and she told me that that wasn't physiologically possible..what the hell!? During the same time I also bought a little handheld Tens unit that gives you electric stimulation if your vagina to help relax the pelvic floor muscled. Sometimes it works and sometimes it doesn't. I am know to the point where I want to find the underlying cause of my problem. I am sure that my pelvic floor muscles are very tense, but i believe this is because of the pain. Of course my muscles are going to tense up if I am in pain, but I do not think that tense pelvic floor muscles are the main cause of my problem, just a reaction of the vulvodynia. This same doctor also put me back on birth control, but I got off on my own after about 3 months because I noticed an increase in pain and complete loss of libido once again. With some research I have found that testosterone surges around ovulation, and is drastically lost when women are on birth control. I do not know if I have a hormonal imbalance, but I know I have absolutely no sex drive on birth control, and rarely have it when I am off birth control. I am so sick of being in pain and not having a libido and it definitely takes a toll on the relationship I am in now. I feel less of a woman, guilty, ashamed, inadequate, and sometimes insecure. Not only do I have to deal with this problem, but now my partner does too. It's a horrible feeling and some days I am so close to just leaving to deal with this by myself.. Sorry I wrote you my entire life story, but I felt it important to add details. Thank you for listening and if you could inform me of some of the steps you took to treat yourself. How did you know for sure you had a hormonal imbalance? I know you have hair loss and other signs, but I don’t seem to really have other sings except sometimes I break out on my chest. My periods were even fairly regular even off birth control. I don’t really know what to look for and I don’t know how to go about treating it even if I thought it was a hormonal imbalance. I am also thinking about going to a different doctor in a different state. I would like to get an appointment with (name removed).
My burning/stinging pain is almost constant, but the pain fluctuates on a pain scale of 1 to 5 throughout the days and throughout my menstrual cycle. A trend that is very obvious to me is the decrease in pain around ovulation and the increase during the rise in progesterone (towards the end of the cycle). I can actually have sex at the time that I am ovulating and enjoy it somewhat but it only lasts for about 2 days. so weird! However, when I am on birthcontrol I have pain which is worse throughout the entire cycle. Birth control = shit. If you are on it, get off! My doctor keeps telling me to go on because physiologically it couldn't make my problem worse...I want to smack her...does she think I am making it up? I also noticed that when I eat acidic foods and especially wine, it burns more at the end of my urethra and causes more burning in the vestibule. Do you sometimes have burning urination also? I am sometimes confused on whether I should call my problem vulvodynia or vestibulodyina because the pain is strictly limited to the entire vestibule area, but it is constant. Yes, touching it provokes more pain, but I have definitely feel the burning sensation just sitting around or walking. Some women the have compressed nerves in their lower back or spine get vulvodynia, but also have burning or shooting pains in their lower back or thighs. This is where the gabapentin comes into play, since it is designed to block these pain signals. I have been on 2400mg of gabapentin for a year and a half and I believe it has done NOTHING. About two months ago I started to get off of it myself and now I am down to 600mg a day. Although this is without my doctor's consent, I really could not give two shits right now because I hate being on drugs and I am fed up with my doctor who thinks she knows my body better than I do. Since that gabapentin did not work, I believe there is more to my problem that just "nerve pain". There have been women whose vulvodynia has been due to hormonal problems. Are your periods regular? Do you ever get headaches? These could be signs that you have hormonal imbalance which is causing the vulvodynia. In my case I believe that hormones are related since my pain fluctuates throughout my cycle. Now, a hormonal imbalance might not be causing MY problem since my periods are pretty regular, but hormones definitely affect my pain...why? Possibly because your vestibule tissue needs adequate levels of testosterone and estrogen. I have tried estrogen cream on the area with no success but have never tried testosterone cream or a combo of both. This is something I am working on. I found a doctor named (name removed) who seems to be the best..here is his website..one should definitely check it out. http://cvvd.org/ Read everything he says about the different causes of vulvodynia and vestibulodynia. There seems to be many different causes and therefore many different treatments. If you do have an abundance of nerve cells that have grown in the vestibule tissue, then surgery or removal of that tissue could also help. I am scheduling an appointment with this doctor in the summer. If you have any questions feel free to email me again. Btw, has the gabapentin cream helped at all? I read about that but my doctor doesn't prescribe it. I get lidocaine which kinda numbs the area for about 2 hours and then goes away. I also have an E-stim unit in my house which sometimes helps some with the pain, and I do my pelvic floor exercises which sometimes helps with relaxing. However, I feel that the tension of pelvic floor muscles is due to the pain in the vestibule..not the other way around. so I feel that if I am not addressing the underlying problem of the pain, the pelvic floor therapy will not help. Normally pelvic floor treatment is for patients that have vaginismus (or involuntary contraction of the muscles).
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OK here is an up to date version of what is going on with me and what I know about my vestibulodynia. I went to see Dr. (name removed) in Annapolis, Maryland. He is world renowned at being one of the best in female sexual disorders and I was tired of my doctor not listening to me. He does an extremely thorough evaluation to find out the cause of your vulvodynia. There are about 12 different causes so of course the treatments for each patient will vary. He told me that 75% of the people that walked into his office had vestibulodynia, and 70% of those 75% had it because of birth control pills. Especially the newer birth control pills like yasmin, orthotricyclin low, nuva ring, etc. The reason is because bc permanently alters you liver to produce more sex hormone binding globulin. SHBG attaches to the free testosterone in your body and estrogen. Your vestibule tissue needs adequate levels of testosterone and estrogen and contains those receptors in that tissue. When the tissue is not receiving those hormones it gets irritated and inflamed. This also explains why pain sometimes fluctuates throughout a woman's cycle. Your testosterone levels rise and fall too. I couldn’t believe the pill could do something like this because I haven't been on the pill for a year, but he said it didn't matter because there is research being done on how it can permanently alter how much SHBG your liver produces. Scary! A week later I got my lab results back for how much FREE testosterone was in my blood and I had less than half of what a normal female my age should have. I now have a testosterone and estrogen compound that he prescribed. I apply it to the Vestibule tissue and I can already see a difference. I encourage everyone to check out his site. www.cvvd.org and read everything you can!
(Physician name removed by EmpowHER Moderator.)
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Add a Comment129 Comments
Hi all,
September 16, 2016 - 5:33pmI had vulvodynia for 2 years and I am on the other side of it and can have penetrative sex again! I still almost never wear underwear because i got out of the habit:) Like seemingly everyone, I had a lot of shitty visits and misdiagnoses and used several topical steroids to no avail. What worked the most for me was pelvic floor physical therapy, and I only found out about it after talking to women who had gone to a pelvic floor pt after childbirth. The PT was by far the most useful part of my recovery but I also took 30mg of amitripltyine every night, and found acupuncture to be helpful as well. Just know you're not crazy, you're not exaggerating, it sucks and don't bother with people or practitioners who don't validate that.
This Comment
Wow thank you for that info!! i've been searching for years. I had sore vestibule when i was a new born but it would be triggered by sugar and acid foods such as oranges but wasn't chronic so it went away if i had potassium citrate and drank lots of water. But when i was 16 i went on the contraceptive pill and it started to be chronic. I then stopped it when i was 17 and the discomfort went away but then i went back on it and since then it has never gone. Apart from one week when i took threelac friendly bacteria but then it stopped working. I actually had pain free sex for a week!! I am now 38 and the skin is so sore i began to do more research.
The liver thing makes sense because i do have an issue with my liver and it shows up when i am pregnant.
I think i will go back to my doc now and ask for the testosterone test.
Thank you so much!! amazing info
Hannah
July 14, 2016 - 2:47pmThis Comment
I was just diagnosed with this same thing you all were.. and its first of all, very helpful to know I'm not the only one out there with the same thoughts, feelings, and pain. I decided to go on birth control and quickly got off of it after the first month due to some terrible side effects, and during this one month developed this pain that is now on-going for 3 months since ceasing the birth control pills. I've been doing some research and also feel that perhaps its an issue with my estrogen levels, but my doctor too, rather go the anti-depressant/anxiety route, which I'm not too keen on. I'm so glad I found this community where we can at least support one another and perhaps lend an ear and a helping hand. We all know what is best for our own body after all! I hope all that have this condition find solutions to get rid or at least ease the pain.
February 16, 2016 - 1:08pmThis Comment
Hi I just want to say I totally understand how you are feeling. My pain has been going on for 3 years now and seemed to start around the time I began taking a combined birth control pill. It seemed to be a bit better when off the birth control however it is still uncomfortable most of the time and makes intimacy almost impossible. Like you, it weirdly seems ok/bareable for me for a few days around ovulation. I have tried topical creams and the next step my gyno wants to try are the anti depressants which I am really weary of because not only does it potentially open doors to more issues (e.g. side effects) it still isn't addressing the cause of the problem. I've asked her if I can have something to increase ym estrogen and testosterone levels to see if it makes a difference but the gyno doesn't seem to want to do that and won't listen to me. Feeling very stuck and alone at the moment and feel so guilty as my boyfriend who i have been with for 9 months is the most patient, gentle and understanding person I know. It deeply hurts to know that we can't both fully enjoy intimate moments - my libido has completely disappeared as a result of this pain too which makes me feel even less human.
November 17, 2015 - 2:35pmThank you so much for the updated information at the end. i will take this in to my gyno and ask if i can try estrogen and testosterone as I am convinced it was the pill which caused my problem.
This Comment
Really hope you get the answers and treatment you want. It is such an uncomfortable pain to have and it does affect everything. I was also new into a relationship when I started with it and luckily I too had a patient boyfriend but it can make you feel all the more guilty, and just want to have a 'normal' relationship without having to feel paranoid that if you are intimate that the pain may get worse etc. The only thing that worked for me was the amitriptyline, I had no side effects and it was the only thing that worked for me. I slowly came off them after a time and I'm so pleased to say "touch wood" have been fine for 3 years now. Good luck and keep us updated. Xxx
November 17, 2015 - 2:54pmThis Comment
Just want to chime in about the estrace! I'm 30, not on menopause, and generally pretty healthy. I've been suffering from vestibular vulvodynia for about three months now, and although it's uncomfortable (constant pain, between a 1-4 generally), I have not yet gotten desperate enough to try elavil like my doctor wants me to, especially since I'm not 100% convinced it is nerve pain. Thank you to everyone who has suggested I get my hormones checked! I haven't done that, so I don't know if they are what they should be or not (I only took birth control for three months 12 years ago, so I doubt that's a factor, but that doesn't mean my hormones didn't get screwed up somehow). I've been using Estrace for less than a week, and so far, I don't know if I'd say it's helping me. When I put it on my vestibule, it starts throbbing soon after, and last night I got uterine pains. The first night I used it, I had a headache the next day (very unusual for me - I'm not prone to them), but that was just once. I haven't noticed any hair loss or skin irritation - just that weird throbbing. I hope I'm not making things worse by continuing! It doesn't seem like it - the throbbing eventually stops, and my symptoms are no worse than usual. I hope the pain is a sign that my body is fighting back, but we'll see...
November 1, 2015 - 10:07pmThis Comment
I'm responding to my own comment so that people can get updates. So the vulvadynia is still a problem in my life, but it is improving ever so slowly. I have not yet taken elavil or neurontin orally, because my doctor located the source of my pain (the posterior, "6 o'clock" part of my vestibule) and determined that it was such a small area that she was a little hesitant to prescribe something that might give me side effects. I agreed with her. Not that a small area can't create distracting levels of discomfort, but I felt like I'd rather exhaust my topical options first. I have been using a mixture of a neurontin compound, lidocaine, and estrace for the past several months. For awhile, I was applying some form of topical agent up to 6 times per day (although I only do the estrace once, at night). Gradually, the pain has improved to the point where I often only use one of the numbing creams 1-2 times per day, so this treatment plan does seem to be helping. I also take evening primrose oil, a hair skin and nail vitamin with a lot of B12 in it, a probiotic, and alpha lipoic acid every day. My doctor especially approved of the evening primrose oil, and alpha lipoic acid known to help with diabetic neuropathy, so I figured it was worth a shot. I also bought a TENS machine, and put the electrodes on my lower back by the sacral nerve sometimes at night for 30 or so minutes while doing deep breathing. It does seem to help.
In spite of my considerable improvements, my pain does seem to return with a vengeance during certain points in my cycle (right before my period, in particular). So while I do feel that nerve damage is my main problem - everyone who has examined me says that visually, the skin in that area looks completely fine and not inflamed - I think it's possible that hormone fluctuations are messing with my nerves. I never did end up getting the full hormone test, but I think I will request that now that my pain pattern is more clear. My doctor has also been suggesting botox, which she has seen work for a lot of her patients. I want to understand my hormone's better before I try that, but I would encourage others to look into it! From what she's seen and what I've read, it can be very successful.
This condition is miserable, and I hope we all get better soon. I promised myself that I would post in all the forums I could when I got better so that people would know that there is hope! I'm not there yet, but I figured an update couldn't hurt.
February 10, 2016 - 12:47pmThis Comment
Thank you so much for sharing your story. I can completely relate to everything you said and what a relief to know I wasn't the only one to ever feel that way. The countless visits to the doctors and specialists getting nowhere and feeling like no-one understands and never seeing an end to this horrible feeling was a very frustrating and upsetting time. After 2 years of suffering I was finally diagnosed at age 28. The specialist at the time said there was no known reason or cure, sometimes it can last 2 weeks, 2 years, 10 years etc. the only thing that worked for me was a low dosage of Amitriptyline. After 5 years on it I started to lower the dosage further and slowly came off them (my husband and I wanted to try for a baby). After a few attempts of coming off then it finally went. This was 3 years ago but still to this day I get so paranoid that it will come back again, any little twinge or stinging sensation more or less sends me into a panic attack. I too completely lost my libido and it has never returned. Luckily I have a very understanding husband but we are now trying for baby number 2 and it's such a shame I can't enjoy the trying but! There needs to be something that makes people more aware of this condition including doctors. So pleased I found this site. Wishing everyone well.
September 15, 2015 - 2:23pmThis Comment
Hey thank you for your story I have been dealing with this for a couple of years now so frustrating can you please tell me what amitriptyline? Thanks
October 20, 2015 - 5:08pmThis Comment
Hi, amitriptyline can be used as a mild depressant but is also used for acute pain. I was only on a dose of 20mg but found it really helped. The first couple of weeks you just feel like you have a bit of a hangover but after that absolutely fine.
November 16, 2015 - 3:20pmThis Comment